Have you found yourself in the grasp of complete overwhelm & despair at least once (or maybe hundreds) since receiving the shock of your child's medical challenge(s)? Does it feel impossible to find joy and acceptance in the midst of chaos and heartbreak? Join us, as we candidly share our personal journeys to acceptance, full of ups and downs, and the many surprising gifts we never could have imagined. Personal experiences, reflections, and lessons learned are laid bare, offering insights that are not only enlightening but also inspiring. Our discussion touches on the importance of acceptance, advocacy, balancing expectations, and how adapting to new roles and realities can be REALLY hard . Hear our stories of how we have come to embrace acceptance, redefining norms, and the power of letting go of perfection. Our hope is to help you understand that acceptance is not just about coping, but it's about transforming our perspectives and growing in the process. We share how the beauty of acceptance has allowed us to understand our children's needs better and become more assertive in medical situations.Lastly, we explore the freedom of embracing imperfection and letting our children explore life. Balancing parental support and a child's independence is crucial, and we talk about how acceptance plays a significant role in this. We underscore the importance of being kind to ourselves and having a strong support network. On this journey, celebrating our children's strengths and seeking support when needed becomes an important aspect of acceptance. So, join us on this enlightening journey of acceptance, transformation, and finding joy even in the most challenging situations.Additional resources:For more information on acceptance, we recommend looking into  Nobody’s Perfect: Living and Growing with Children Who Have Special Needs by author, Dr. Nancy Miller.Parent to Parent USA: Our mission is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.https://www.p2pusa.org/To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Join hosts, Ashlyn & Emily, in an earnest conversation about the comparison trap that we all fall in and out of on a regular basis and learn why this is not something to feel shame about or make ourselves "wrong" for doing. Before diving into the episode topic, (fast forward to minute 26:50 if you wish to go straight to the comparison conversation), they spend time sharing updates on their family lives, everything from major life realizations, the power of mantras, starting homeschooling, and preparing for a full week of doctor appointments with numerous specialists.  In addition, you will hear some exciting news for Charlotte's Hope Foundation:The first foundation newsletter will be shared out in the next couple weeks, providing an overview of the wins and progress the foundation has made and overview of next steps. Email contact@CharlottesHopeFoundation.org with your name, email, and address if you would like to receive a copy of the newsletter or subscribe to the podcast on our website to be added to our email list.Mark your calendar for the inaugural Celebration of Hope event, to be held on May 4th, 2024 in Wooster, OH. More details to come over the coming months!Since the release of episode 21: Charlotte Has a Diagnosis, numerous families have reached out to connect with the foundation and Emily over their shared diagnosis of Hardikar Syndrome for their child. The Comparison TrapEmily & Ashlyn have made a point to address the comparison trap from the beginning of their friendship and have learned a lot from facing the sting of the thoughts and feelings that accompany comparing your child's medical journey to another's, be it someone with only healthy children, someone with a less complex diagnosis, or even someone whose child has it "far worse" than your child. The reality is that comparison is inevitable, it's part of how we process our life experiences and it's completely natural. However, as a parent or caregiver of a child with medical needs, comparison can easily turn into a downhill slide straight to shame, anger, resentment and/or self-deprecation.  Through out this conversation, Ashlyn & Emily repeatedly come back to the fact that it's not the thought or feeling that you experience that matters most, but what you do with those thoughts and feelings that truly determine how comparison will affect you. In this episode, you will hear multiple examples of comparison that both moms have experienced and how they have learned to handle those moments over time. Learning to acknowledge the thoughts and emotions without punishing ourselves is the ultimate goal and you will hear different ways to work on this skill throughout the conversation.  By the end of the episode, you will walk away with the knowledge that you are not alone in your thoughts of comparison, and you will have at least a couple new tools you can use the next time you find yourself getting stuck in the trap of comparison.Additional Show NotesEmery's Daily Mantra:I am braveI am strongI am smartI am beautifulJesus loves meAshlyn's Mantra:I am calmI am capableI am doing a great job Ephesians 6: 10-18  "Finally, be strong in the Lord and in the strength of his power. Put on the whole armour of God, so that you may be able to stand against the wiles of the devil ... Therefore, take up the whole armour of God, so that you may be able to withstand on that evil day, and having done everything, to stand firm.  Stand therefore, having fastened the belt of truth around your waist, andTo get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too. How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls "brutally practical tools" and resources to simplify and support the caregiver's life.In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include: Stages of adaptation Parent to Parent USA Parent Training and Information Centers, Project Sunshine, Hear Your SongPersonal KanbanShe is CharlotteThis list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs. Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There's immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Ashlyn introduces her own personal support systems, her trusted therapist, who is rose loving, and an aspiring stick figure artist (not really, but she could be!), Chelsea Cassel.  We unmask the often overlooked truth—caregivers and parents are also victims of trauma, even when they are not the direct recipients of a traumatic event. In this discussion we navigate the murky landscapes of trauma, grief, and guilt, shedding light on the varying reactions to trauma across genders. Our exploration of pain triggers and the necessary practice of processing traumatic experiences opens the doorway to how we can begin the healing process.Between the two of us, we dig deep into the realm of emotional processing. Chelsea, with her expertise as a Marriage and Family Therapist, guides us through the healing potential of journaling, scheduling time to process, and being compassionate towards ourselves. We contemplate how trauma can take the reins of our lives, seeping into our everyday routines, and how essential it is to take back control. Towards the end of the episode, we touch on the liberating power of acknowledging our traumas and how to move forward when our bodies harbor memories that our minds might not recall.We stressed the importance of not minimizing our experiences and admire the resilience that emerges from this process. We explore the power of self-dialogue and encourage listeners not to shy away from seeking professional help. Chelsea and I conclude by emphasizing the healing force of support and connection, advocating for self-care and self-expression. This emotional odyssey, laden with insights and revelations, is an invitation to us all. Come, join us, as we traverse this uncharted terrain together so we can take the necessary steps to free us from the strongholds of "trauma brain" and be the best advocates for our children while reclaiming our own lives. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Do you ever feel like you’re barely surviving while raising a child with medical complexities? You’re not alone. Join us as we connect with Lily Brown from Parent to Parent USA, a parent herself, who shares her personal journey and the transformative stages of adaptation that often come with this unique role. These stages, as identified and written about in Dr. Nancy Miller's (PhD, MSW) book Nobody's Perfect: Living and Growing with Children who have Special Needs, are so very relatable to those seasoned parents of children with medical complexities. For those who are new to the journey, the stages provide context to what you're experiencing.We kick things off by diving into the initial stage of ‘surviving.' Dr. Miller says it best in her book, "being in a state of Surviving doesn't last forever. It just seems that way at the time." One NICU mother's reflection describes it well, "there was so much grief ... It was like a death, but no one had died."Then comes the 'searching' stage where a parent moves into action, purpose, and the quest for control. Lily shares her insights on transitioning into the ‘settling in’ stage, a calm after the storm where new routines emerge and a different sense of stability is established. Then comes stage 4: 'separating.' Often as parents of children with medical needs, setting them up for successful independence from you comes with added obstacles and even severe limitations. We reflect on the vital role of introducing children into conversations about their medical care and its empowering effect. We emphasize the importance of recognizing our children’s capabilities, fostering their independence, and celebrating small victories in parenting.We discuss the importance of understanding each stage, how it can offer resounding support, and provide a sense of shared experience that can fast-track bonding between parents on a similar journey. Lastly, we signpost you towards Parent to Parent USA, a resourceful compass for parents navigating similar terrains.So, tune in, gain insights, and perhaps discover a new perspective on your journey.For reference: The Four Stages of Adaptation Are: 1. Surviving2. Searching3. Settling In4. Seperating To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

What if you could navigate the emotional landscape of raising a medically complex child without being consumed by guilt? Join us as we journey through such a life, reflecting on our victories, challenges and the invaluable lessons we've learned along the way. We talk about maintaining confidence amidst adversity, finding the right feeding methods, preventing urinary tract infections, and dealing with hearing and vision issues - a testament to the resilience all parents must embody.From managing ostomy bags to celebrating our children's milestones, we explore our lives with raw honesty. We shed light on the crucial role of medical professionals and the importance of their advice in our decision-making process. We reveal the strides being made by the Empowered by Hope Foundation, discussing the milestones and updates from our personal lives - always celebrating the power of hope and resilience.We dive into a candid discussion about the role of guilt in our lives as parents of medically complex children. We share our coping mechanisms, how we let go of self-blame and how we let research guide our decisions. We emphasize the need to confront guilt constructively, maintaining perspective, setting an example for our children and building resilience. Join us on this journey, find hope in our shared experiences, and be reminded that you are capable, equipped, and not alone.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Have you ever wondered how would it feel to juggle parenting six children while managing the challenges of childhood illnesses, with not one, but two kids? We bring you an intimate conversation with Laurie Szabo, a French teacher, and an avid globetrotter, who sheds light on her journey as a mother to six kids. The way Laurie and her husband navigated the challenges of raising two children with medical conditions is nothing short of inspiring. Her insights on transitioning advocacy responsibilities to your children as they become adults are invaluable. We get a taste of Laurie's exciting traveling adventures across 37 countries that are filled with rich experiences. This includes snorkeling with whale sharks in the Philippines, trekking two miles into the jungle to explore the ATM Cave in Guatemala, and an amusing meal in Kuala Lumpur. Lori also gives us a peek into their family's Disney tradition and encourages us to seize opportunities for fun, reminding us that it is okay to take a break from everyday responsibilities.We wrap up the conversation with Laurie's valuable tips on parenting and prioritizing responsibilities, shedding light on the importance of instilling leadership roles in older children, the significance of family time and activities, and how parents can support their children with medical conditions. Laurie also emphasizes the importance of self-care for parents, which can take many forms, from taking a break to engaging in activities that bring joy. Buckle up for this episode, filled with hope, unity, and invaluable parenting wisdom.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Imagine navigating through a labyrinth of complex medical needs for your child, coordinating multiple specialists, and grappling with the emotional toll of balancing her care with your own work. Emily bravely shares her personal journey of exactly this rollercoaster ride in this touching episode. Join us as we venture through the various stages of pediatric surgery from Emily and Ashlyn's perspective; from the very beginning of symptoms discovery, to research, to surgery preparation, and finally the surgery itself. Each stage unravels fresh emotions and challenges. The post-surgery recovery phase is a journey in itself, involving intense 24-7 care and the struggle of finding new normalcy.The 10 stages: Symptoms appear - you know something is wrong but don’t know what; seek out specialist for answersDiscovery - need for surgery is determined; denial is often involvedResearch - research all possible options to try to avoid surgery or make sure it’s the right surgerySurgery Prep - you come to the conclusion this is the right next step and now you get very busy with all the details to prepare. Anxiety and jitters propel you into managing each and every detail - as if you are nesting for a newborn babySurgery Day - game time. You’ve lost sleep, been anxious, worried, researched, cried. Now it’s game time and you’re just ready for it all to be over. You are ready to enter the battle that is postop recovery- as ready as you can be.Post-op Recovery - all hands on deck to help recovery go as smooth as possible - it’s like having a newborn, everything for them comes first, hardly any sleep but unfortunately the main difference is there is pain to contend with. You're all exhausted and out of sorts. The Black Hole: the term we have fondly dubbed for the month following major pediatric surgery when its pain medication management, side effect management, medical equipment, wound care, infection watch, follow up appointments, etc. Light at the end of the tunnel - a  month from surgery when you finally see your kid doing something they couldn’t do before surgery or being joyful, a kid again. You can finally take a deep breath for the first time since learning surgery was coming. Clean up of emotional fallout - the month 5 weeks after surgery and on. You and your significant other and your family pick up the pieces that all fell to the wayside while you were surviving. Siblings' emotions spill over, emotional processing of the trauma.Life after surgery - by month 3, life has a new normal and things are looking bright again or manageable - you’ve climbed out of the black hole. Leaving it forever changed. In the midst of it all, Emily finds time to share her reflections on the importance of gratitude and appreciation, even during challenging times, and how important it is to celebrate small victories along the way. Listen in as Emily opens up about the emotional weight of her journey, and the extraordinary resilience it takes to normalize medical complexities and appreciate the small moments of life, even after a difficult experience. Be sure to subscribe, reach out, and share our podcast with those who might find comfort and solidarity in these stories.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Advocating for our children can be a challenge, especially when we're trying to balance strength and vulnerability. Ashley Milbourne and I share our personal experiences with navigating advocacy, expectations, and vulnerability while striving to move forward in our advocacy journeys. We also delve into the topic of trusting others with our children's care, and the importance of recognizing when outside help is needed.Parenting can be difficult, especially when dealing with a health condition or trauma. In this episode, Ashley and I explore the significance of having a support system, finding a safe person for support, and the power of connection and solidarity when taking our children to medical appointments. Join us as we celebrate the resilience it takes to keep pushing forward on this journey of hope.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Preparing for your child's surgery can be an overwhelming experience, but there's hope and strength to be found in each other's stories. Join us, Emily and Ashlyn, as we share personal experiences and practical tips on navigating this challenging journey, from mental and emotional preparations to taking care of ourselves and our children during the process. Discover how we've celebrated post-surgery victories and the milestones our children have achieved in their recovery.Listen in as we explore the invaluable role of child life specialists, the importance of pain management plans, and the support and wisdom to be found in connecting with other families facing similar challenges. We'll also discuss how to approach discussions with your partner and prepare for the unexpected, as well as stocking up on essentials and addressing the surgery with your child. Throughout this episode, we'll emphasize the significance of living in the present and focusing on each step of the journey. By the end of our conversation, you'll gain insight into the practical aspects of surgery preparation and post-operative recovery, the emotional and mental aspects of facing this challenging time, and the incredible support that can be found in connecting with others who truly understand. We hope our experiences and advice will bring comfort and encouragement to you and your family as you prepare for and navigate your child's surgery and recovery.To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Lily Brown has experienced firsthand the magic in the match of parent to parent support after her daughter was diagnosed with a rare genetic condition at age 3. As Co-Executive Director for Parent to Parent USA, she is dedicated to strengthening the Parent to Parent community so that no parent feels alone, ever. She leads the organization in the areas of development, program evaluation, volunteer engagement, and fiscal management. She draws on her entrepreneurial background to scale operations using a combination of talent and technology.In today's episode, Lily shares her own personal story of hope and how she and her husband, David, worked together to advocate for their amazing daughter, Suzie, who received an official diagnosis of Cohen Syndrome at the age of 3. They even went so far as to relocate from Texas to Pennsylvania to give Suzie access to what they felt were the best resources available to meet her needs and offer the best quality of life. Emily, Ashlyn and Lily all connect over their shared story of having daughters with rare medical complexities and how connecting with other families for support has helped heal wounds, open unexpected doors and led to amazing friendships and discovering untapped strength within. We want to hear from you if anything from this episode connected with your or if you would like to share your story of advocacy! Contact us at contact@charlotteshopefoundation.org or send us a message through our social media accounts.To be connected with your local Parent to Parent chapter, visit: https://www.p2pusa.org/parents/You can follow Parent to Parent USA at:Facebook: https://www.facebook.com/p2pusaInstagram: https://www.instagram.com/p2pusa/Cohen Syndrome Association: http://www.cohensyndrome.org/Cohen Syndrome Research Foundation:  https://csrfoundation.org/To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

With more than 30 years of experience, having cared for thousands of patients, and with a heart made of pure gold, former neonatal nurse Amy Bartholomew joins Emily K. Whiting, sharing tips for how to advocate for your newborn baby in a Neonatal Intensive Care Unit (NICU). Amy was Charlotte’s primary nurse when she spent those first few rocky months of her life in a level IV unit, designed for babies needing the highest level of acute care. We are confident as you listen to this episode you will feel more equipped to handle life in the NICU, AND you’ll fall in love with “Miss Amy,” “Aunt Amy” and “Nurse Amy,” as Emily fondly calls her all three. In this episode you will: Learn what many acronyms and medical jargon used in the NICU mean, such as CBC, TPN, NPO and so much more. She provides “translation to the NICU language,” Gain confidence that no question is silly or stupid, Voice your opinions to medical staff and learn specific avenues to do so, Learn what NICUitis is and how to avoid it,And so much more. If you or anyone you know is about to have their baby in the NICU, or is currently in the NICU, you don’t want to miss this episode. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

“I can’t do everything,” and “This is going to end.” These are the two key insights co-host Ashlyn Thompson shares with us about her recent surgery recovery experience with her daughter Emery, who was born with a congenital anomaly called bladder exstrophy. Now back on United States soil, Ashlyn reflects on the challenges of the last six weeks caring for her two-year-old after a life-changing surgery in England. Between Ashlyn’s post-op experiences with Emery and co-host Emily Whiting’s with Charlotte, the two have navigated 18 pediatric surgeries. They discuss “the black hole” that is pediatric post-op and how to survive it. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

After six years of living in what co-host Emily Whiting calls the no man’s land of rare undiagnosed disease, her daughter Charlotte has finally received an overarching diagnosis that explains her medical anomalies. In today’s episode, Emily reveals that diagnosis and the wild journey that led to the genetic anomaly discovery. She openly discusses the challenges of living with an ultra-rare undiagnosed disease, the pros and cons of having a diagnosis, and what it might mean for Charlotte’s future. Emily begins the discussion of how Charlotte has no ‘medical home’ where her care is proactively managed, and the care gaps despite having more than 20 specialists involved. Join Emily to dream about how Charlotte’s journey can positively impact and improve the world of pediatric complex care, of living with a rare and undiagnosed disease, and, of how Charlotte’s Hope Foundation could one day unite the nine current families known to have the same syndrome as Charlotte (and maybe even more as they continue to be discovered).To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Guest Ashley Milbourne joins host Ashlyn to share her story of first receiving the news of her own health challenges and those of her unborn baby at the routine anatomy scan nearly halfway through her pregnancy. Ashley shares the turbulent road for her and her family after that fateful ultrasound, all while navigating the added challenges of Covid-19. In this episode you learn how one mom gained her advocacy voice as she was hospitalized and on bed rest, separated from her family due to Covid-19 hospital visitor restrictions, navigated the wide array of emotions as she wrestled with the reality that her own life was at risk, grappled with diagnoses for her unborn baby that ended up being inaccurate, and how she now embraces the challenges, joys and triumphs of raising her resilient sweet 2.5-year-old daughter with Bladder Exstrophy. You don’t want to miss this episode. You will walk away with such encouragement, inspired by incredible grace and empowered with the hope that you too can advocate for your child in phenomenal ways. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Ashlyn Thompson surfaces from the “black hole” that is pediatric post-op recovery to share an update on her daughter, Emery. She shares: How Emery’s surgery went, What it’s like having pediatric surgery in a different country (medical tourism), The worries, thoughts, anxieties, triumphs and setbacks that are post-op,The ongoing struggle with pain control, The cry of a parent’s heart as she watches her baby writhe in pain,And so much more. In this episode you will catch a glimpse of the reality of pediatric surgery recovery. If you are preparing for your own child’s upcoming procedure, this episode will help arm you with things to consider and questions to ask your surgeon before the big day. If you are a medical professional, this show will give you tips for offering compassionate care that invites the parent to be part of the recovery team and helps diffuse the high emotions often felt by patients, families and parents involved in post-op care. And, as a little bonus, we discuss a pre-op and post-op checklist to help parents and caregivers navigate these challenging times (which is soon to come!). In the end Ashlyn reminds us, this pain will not last forever. We cling to this knowledge and hope as we trudge our way through the darkness of post-op recovery. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

“You are worthy of happiness and joy in parenthood and this happening to you isn’t your fault,” today’s guest Elaine Bishop reminds us. She adds, “There is still so much joy to be had in raising these little people, even though it’s not going to look like what you thought it would.” These are just some of the nuggets of wisdom Elaine shares with us in this incredible episode on advocacy. Elaine is a certified nurse midwife and Emily Whiting’s former Maternal Fetal Medicine Care Coordinator when she was pregnant with Charlotte. Elaine shares words of deep compassion and invaluable insight for those facing prenatal diagnoses and she also gives concrete tips for advocating for your unborn child. She says, “Advocacy can sometimes feel synonymous with conflict, but it’s not necessarily,” and she provides basic tips for beginning your advocacy journey. You don’t want to miss this episode! To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Ashlyn and Emery take us with them as they fly from Indiana, United States of America, to London, United Kingdom, for a life-changing procedure. They are the first American patients to undergo this surgery which is not (yet) offered in the United States. In this episode you will learn the background story of what led Ashlyn and her family to decide to “cross the pond” for their daughter’s medical care. We discuss the hardships, fears, excitement and worries that go into making such monumental decisions for our kids. We talk about the common barriers to “medical tourism" which the Thompson family face. We launch our trip alongside Ashlyn and Emery as we support them and cheer them on in their journey toward healing. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Fellow mama of a beautiful child with medical complexities, Haleigh Dean shares her incredible insights to two questions we posed: Given what you’ve gone through with your child, what is one thing you wish you’d known at the beginning of your medical journey that you want to share with listeners now?What is an unexpected blessing or positive that’s come from this journey that you could not have imagined at the beginning of it?Haleigh reminds us, “it’s okay to grieve what you thought was going to be.” She encourages us, “don’t be afraid to advocate for your child,” adding, “if you feel something is not right, it’s okay to tell them (the medical professionals).” And, she gives us hope that from meeting other parents and caregivers raising children with medical complexities, she has gained confidence in her parenting/advocacy role and you can too. You don’t want to miss her words of wisdom! To get more personal support, connect with us directly at CharlottesHopeFoundation.org.

Fellow mama of a beautiful child with medical complexities, Ashley Milbourne shares her incredible insights to two questions we posed: Given what you’ve gone through with your child, what is one thing you wish you’d known at the beginning of your medical journey that you want to share with listeners now?What is an unexpected blessing or positive that’s come from this journey that you could not have imagined at the beginning of it?She assures us, “we don’t have to have a medical degree to advocate for our babies”. She encourages us, “I can do this and you can too.” And, she reminds us, “kids are resilient!” This is the first of several episodes highlighting guest parents and caregiver’s answers to these questions. You don’t want to miss her invaluable story of hope! To get more personal support, connect with us directly at CharlottesHopeFoundation.org.